Physicians' labelling of end-of-life practices: a hypothetical case study.

OBJECTIVES: To investigate why physicians label end-of-life acts as either 'euthanasia/ending of life' or 'alleviation of symptoms/palliative or terminal sedation', and to study the association of such labelling with intended reporting of these acts. METHODS: Questionnaires were sent to a random, stratified sample of 2100 Dutch physicians (response: 55%). They were asked to label six hypothetical end-of-life cases: three 'standard' cases and three cases randomly selected (out of 47), that varied according to (1) type of medication, (2) physician's intention, (3) type of patient request, (4) patient's life expectancy and (5) time until death. We identified the extent to which characteristics of cases are associated with physician's labelling, with multilevel multivariable logistic regression. RESULTS: The characteristics that contributed most to labelling cases as 'euthanasia/ending of life' were the administration of muscle relaxants (99% of these cases were labelled as 'euthanasia/ending of life') or disproportional morphine (63% of these cases were labelled accordingly). Other important factors were an intention to hasten death (54%) and a life expectancy of several months (46%). Physicians were much more willing to report cases labelled as 'euthanasia' (87%) or 'ending of life' (56%) than other cases. CONCLUSIONS: Similar cases are not uniformly labelled. However, a physicians' label is strongly associated with their willingness to report their acts. Differences in how physicians label similar acts impede complete societal control. Further education and debate could enhance the level of agreement about what is physician-assisted dying, and thus should be reported, and what not.

Deciding about continuous deep sedation: physicians' perspectives: a focus group study.

Although guidelines restrict the use of continuous deep sedation to patients with refractory physical symptoms and a short life-expectancy, its use is not always restricted to these conditions. A focus group study of physicians was conducted to gain more insight in the arguments for and against the use of continuous deep sedation in several clinical situations. Arguments in favour of continuous deep sedation for patients with a longer life-expectancy were that the overall clinical situation is more relevant than life-expectancy alone, and that patients' wishes should be followed. Continuous deep sedation for patients with predominantly emotional/existential suffering was considered appropriate when physicians empathize with the suffering. Further, some physicians indicated that they may consider the use of sedation in the context of a euthanasia request. Arguments were that the option of continuous deep sedation is a better alternative; it may comfort some patients when their thoughts about potential future suffering become unbearable. Further, some considered continuous deep sedation as less burdening or a bother to perform. We conclude that physicians' decision-making about continuous deep sedation is characterized by balancing the interests of patients with their own feelings. Accordingly, the reasons for its use are not unambiguous and need further debate.

Dutch criteria of due care for physician-assisted dying in medical practice: a physician perspective.

INTRODUCTION: The Dutch Euthanasia Act (2002) states that euthanasia is not punishable if the attending physician acts in accordance with the statutory due care criteria. These criteria hold that: there should be a voluntary and well-considered request, the patient's suffering should be unbearable and hopeless, the patient should be informed about their situation, there are no reasonable alternatives, an independent physician should be consulted, and the method should be medically and technically appropriate. This study investigates whether physicians experience problems with these criteria in medical practice. METHODS: In 2006, questionnaires were sent to a random, stratified sample of 2100 Dutch physicians (response rate: 56%). Physicians were asked about problems in their decision-making related to requests for euthanasia or assisted suicide after enforcement of the 2002 Euthanasia Act. RESULTS: Of all physicians who had received a request for euthanasia or assisted suicide (75%), 25% had experienced problems in the decision-making with regard to at least one of the criteria of due care. Physicians who had experienced problems mostly indicated to have had problems related to evaluating whether or not the patient's suffering was unbearable and hopeless (79%) and whether or not the patient's request was voluntary or well considered (58%). DISCUSSION: Physicians in The Netherlands most frequently reported problems related to aspects in which they have to evaluate the patient's subjective perspective(s). However, it can be questioned whether placing emphasis on these subjective aspects is an adequate fulfilment of the duties imposed on physicians, as laid down in the Dutch Euthanasia Act.

Quantitative interpretation of age-specific mortality reductions from the Swedish breast cancer-screening trials.

BACKGROUND: Results from five Swedish randomized trials may provide the most conclusive evidence on the effect of mammographic screening and have been used to forecast the expected reduction in breast cancer mortality in other programs. However, those trials demonstrated different degrees of reduction. The interpretation of observed mortality reduction after long follow-up for women aged 40-49 years at trial entry is both important and controversial. PURPOSE: We estimated what percentage of the observed mortality reduction for women aged 40-49 years at entry into the five Swedish screening trials might be attributable to screening these women at 50 years of age or older. Moreover, we calculated the most likely percentage mortality reduction for specific screening programs if the Swedish results were generalized and analyzed whether characteristics of each trial might at least partly explain the observed differences in reductions among the trials. METHODS: Each Swedish trial was simulated with one underlying computer simulation model (MISCAN--MIcrosimulation SCreening ANalysis) of the natural history of the disease and the performance of screening, taking into account nine important trial characteristics. Improvement in prognosis for screen-detected case patients was estimated with age-specific reduction for all trials and each trial design as a reference. RESULTS: An expected 7% reduction in breast cancer mortality for women aged 40-49 years at trial entry (relative risk [RR] = 0.93) was determined by computer modeling, assuming no improvement in prognosis for cancers that are screen detected before 50 years of age. This result indicates that, of the overall 10% observed reduction (RR = 0.90) in the five Swedish trials analyzed, most (70%) of this reduction might be attributable to screening these women in later rounds after their 50th birthday. Using additional trial information, predictions of breast cancer mortality reduction in women 50 years or older might be 11% larger than previously expected, assuming that high-quality mammographic screening can be achieved in nationwide programs. For women aged 50-69 years at trial entry, the differences in expected versus observed mortality reduction among the trials are estimated to be relatively small. (Expected mortality reductions range from 24% to 32%). CONCLUSIONS: Results from the Swedish randomized breast cancer-screening trials should be seen as more favorable regarding the effect of mammographic screening in reducing breast cancer mortality for women aged 50-69 years than was estimated earlier. Our analyses also suggest that the improvement in prognosis due to screening for women aged 40-49 years is much smaller than that for women aged 50 years or older. Approximately, 70% of the 10% observed reduction in breast cancer mortality (i.e., 7%) for women aged 40-49 years at trial entry might be attributable to a reduction due to screening these women after they reach age 50. IMPLICATIONS: Detailed screening data for the 40- to 49-year age group of all Swedish trials should be analyzed to specifically estimate the natural history and performance of screening in this age group.

Age-specific reduction in breast cancer mortality by screening: an analysis of the results of the Health Insurance Plan of Greater New York study.

The 14-year follow-up mortality results from the randomized breast cancer screening trial of the Health Insurance Plan of Greater New York (HIP) were analyzed with respect to the problem of age-specific screening effects. Mortality reduction was measured in three different ways and appears to be homogeneous across age groups. This finding challenges the widespread opinion that the results of the HIP study support the conclusion that breast cancer screening is not effective below age 50.

Short-term effects of population-based screening for prostate cancer on health-related quality of life.

BACKGROUND: Population-based screening for prostate cancer is currently being evaluated in randomized clinical trials in the United States and in Europe. Side effects arising from the process of screening and from the earlier treatment of screen-detected prostate cancer may be important factors in the evaluation. To examine health-related quality of life (or health status) among men screened for prostate cancer, we conducted a longitudinal study of 626 attenders to the Rotterdam (The Netherlands) prostate cancer screening program and of 500 nonparticipants. METHODS: Attenders of the screening program and nonparticipants completed self-assessment questionnaires (SF-36 [i.e., Medical Outcomes Study 36-Item Short-Form Health Survey] and EQ-5D [i.e., EuroQol measure for health-related quality of life] health surveys) to measure generic health status, as well as an additional questionnaire for anxiety and items relating to prostate cancer screening. RESULTS: Physical discomfort during digital rectal examination and during transrectal ultrasound was reported by 181 (37%) of 491 men and by 139 (29%) of 487 men, respectively; discomfort during prostate biopsy was reported by 64 (55%) of 116 men. Mean scores for health status and anxiety indicated that the participants did not experience relevant changes in physical, psychological, and social functioning during the screening procedure. However, high levels of anxiety were observed throughout the screening process among men with a high predisposition to anxiety. Similar scores for anxiety predisposition were observed among attenders and nonparticipants. CONCLUSIONS: At the group level, we did not find evidence that prostate cancer screening induced important short-term health-status effects, despite the short-lasting side effects related to the biopsy procedure. However, subgroups may experience high levels of anxiety. The implication is that unfavorable health-status effects of prostate cancer screening occur mainly in the treatment phase.

[Trends in the agents used for euthanasia and the relationship with the number of notifications]. / Trends in gebruikte middelen bij euthanasie en samenhang met het aantal meldingen.

OBJECTIVE: To provide insight into the relationship between the drugs used for euthanasia and its notification. DESIGN: Retrospective and descriptive. METHODS: By comparing the drugs used for euthanasia according to different components of studies carried out in 1990, 1995 and 2000, insight was obtained into the drugs used in all cases of euthanasia satisfying the definition thereof (death-certificate studies), those cases of euthanasia that, in addition, were defined as such by the physician (physician interviews), and the cases of euthanasia that, in addition, had been reported (reported case studies). RESULTS: In 2001, standard drugs for euthanasia were used in 76% of cases and opioids in 23%. Euthanasia with standard drugs was reported in 73% of cases in 1995, and in 71% of cases in 2000, while euthanasia with opioids was reported in 2% and 1% of cases, respectively. The total percentage of euthanasia reported was higher in 2001 than in 1995 (54% versus 44%), since in 2001 euthanasia was apparently performed more often with standard drugs and less with opioids. CONCLUSION: An increasing proportion of cases of euthanasia is being carried out with the drugs recommended for this purpose. Euthanasia with opioids was rarely reported. Possibly, physicians did not always consider these cases to be euthanasia.

Peripheral hormone levels in controls and patients with prostatic cancer or benign prostatic hyperplasia: results from the Dutch-Japanese case-control study.

The possible relationship between changes in peripheral hormone levels and the occurrence of prostatic pathology was studied in a case-control study, involving estimation of various plasma hormones in 368 Dutch and 258 Japanese men, who were grouped as controls and patients with benign prostatic hyperplasia, focal prostatic carcinoma, or clinically evident prostatic carcinoma. Results of a number of previous, smaller studies concerning interrelationships between hormone levels in elderly men were confirmed within the Dutch and Japanese groups. Plasma levels of testosterone and estradiol were significantly lower in the Japanese men, when compared with those in Dutch men. Probably as a result of this difference in testosterone levels, the ratio between serum levels of testosterone and sex hormone-binding globulin (SHBG) was decreased in the Japanese men, while the ratio between the concentrations of dihydrotestosterone and testosterone was increased. These differences were also found when results from Japanese subgroups (controls and patients with prostate pathology) were compared with those from the Dutch subgroups. There were no significant differences in plasma androgen levels between Japanese or Dutch prostate cancer cases and their respective control subgroups. These findings do not support a correlation between the lower plasma testosterone levels and a lower incidence of prostate cancer in the Japanese men. Furthermore, no significant differences were found between salivary levels of testosterone or the ratio between testosterone and SHBG in the various Dutch subgroups. In Japanese benign prostatic hyperplasia patients, the testosterone to SHBG ratio was significantly increased. In conclusion, the results of this retrospective, cross-sectional study do not indicate that hormonal levels play a primary role in the origin or promotion of prostatic abnormalities. The finding of a lower plasma testosterone in the Japanese men, however, remains suggestive, warranting a more extensive prospective study.

Health-related quality-of-life effects of radical prostatectomy and primary radiotherapy for screen-detected or clinically diagnosed localized prostate cancer.

PURPOSE: The current study was undertaken within the framework of a screening trial to compare the health-related quality-of-life (HRQOL) outcomes of two primary treatment modalities for localized prostate cancer: radical prostatectomy and external-beam radiotherapy. PATIENTS AND METHODS: We conducted a prospective longitudinal cohort study among 278 patients with early screen-detected (59%) or clinically diagnosed (41%) prostate cancer using both generic and disease-specific HRQOL measures (SF-36, UCLA Prostate Cancer Index [urinary and bowel modules] and items relating to sexual functioning) at three points in time: t1 (baseline), t2 (6 months later), and t3 (12 months after t1). RESULTS: Questionnaires were completed by 88% to 93% of all initially enrolled patients. Patients referred for primary radiotherapy were significantly older than prostatectomy patients (63 v 68 years, P <.01). Analyses (adjusted for age and pretreatment level of functioning) revealed poorer levels of generic HRQOL after radiotherapy. Prostatectomy patients reported significantly higher (P <.01) posttreatment incidences of urinary incontinence (39% to 49%) and erectile dysfunction (80% to 91%) than radiotherapy patients (respectively, 6% to 7% and 41% to 55%). Bowel problems (urgency) affected 30% to 35% of the radiotherapy group versus 6% to 7% of the prostatectomy group (P <.01). Patients with screen-detected and clinically diagnosed cancer reported similar posttreatment HRQOL. CONCLUSION: Prostatectomy and radiotherapy differed in the type of HRQOL impairment. Because the HRQOL effects may be valued differently at the individual level, patients should be made fully aware of the potential benefits and adverse consequences of therapies for early prostate cancer. Differences in posttreatment HRQOL were not related to the method of cancer detection.

Withdrawal or withholding of treatment at the end of life. Results of a nationwide study.

BACKGROUND: Decisions to withhold or withdraw treatment (nontreatment decisions) become increasingly important because they have to be made more frequently and more explicitly. This nationwide study provides information on the occurrence and background of these nontreatment decisions. METHODS: Three studies were undertaken: interviews with 405 physicians, 5197 answered questionnaires concerning deceased persons, and information about 2257 deaths collected by a prospective study. RESULTS: Of all deaths, 30% appeared to be sudden and unexpected. In 39% of all nonsudden deaths, a nontreatment decision was made. This percentage varied by specialty (28% to 55%). Nontreatment decisions were made more often in older female patients. The decisions were made at the explicit request of the patient (19%), after discussion with the patient or after a previous wish (22%), or without any involvement of the patient (59%). Of this last group, 87% of patients were not competent at the time of the decision. In 24% of cases of nontreatment, life was shortened by at least a week. Of all physicians interviewed, 56% had changed their attitude since the beginning of their practice, most of them toward more nontreatment decisions at the end of life. CONCLUSIONS: Nontreatment decisions are made frequently in medical practice. Most often the physician has to weigh medical and nonmedical burdens and benefits. For this to be done properly, the patient should be involved whenever possible. Other requirements are optimal palliative treatment, better prognostic knowledge, consultation of other specialists, and the absence of defensive motives.

Attitudes and practices concerning the end of life: a comparison between physicians from the United States and from The Netherlands.

BACKGROUND: This study compares attitudes and practices concerning the end-of-life decisions between physicians in the United States and in the Netherlands, using the same set of questions. METHODS: A total of 152 physicians from Oregon and 67 from the Netherlands were interviewed using the same questions about (1) their attitudes toward increasing morphine with premature death as a likely consequence, physician-assisted suicide (PAS), and euthanasia; and (2) their involvement in cases of euthanasia, PAS, or the ending of life without an explicit request from the patient. Odds ratios, with 95% confidence intervals, were calculated to investigate relation between attitudes and various characteristics of the respondents. RESULTS: American physicians found euthanasia less often acceptable than the Dutch, but there was similarity in attitudes concerning increasing morphine and PAS. American physicians found increasing morphine and PAS more often acceptable in cases where patients were concerned about becoming a burden to their family. There was a discrepancy between the attitudes and practices of Dutch physicians concerning PAS. The proportions of physicians having practiced euthanasia, PAS, or ending of life without an explicit request from the patient differ more between the countries than do their attitudes, with American physicians having been involved in these practices less often than the Dutch. CONCLUSIONS: In this study of American and Dutch physicians, 2 important differences emerge: different attitudes toward the patient who is concerned over being a burden, and different frequency of euthanasia and PAS in the two countries.

A nationwide study of decisions to forego life-prolonging treatment in Dutch medical practice.

BACKGROUND: Decisions to withhold or withdraw life-prolonging treatment in terminally ill patients are common in some areas of medical practice. Information about the frequency and background of these decisions is generally limited to specific clinical settings. This article describes the practice of withholding or withdrawing life-prolonging treatment in the Netherlands. METHODS: Questionnaires were sent to the attending physicians of a stratified sample of 6060 of all 43002 cases of death in the Netherlands from August 1 through November 30, 1995. The questions concerned the treatments foregone, the patient characteristics, and the decision-making process. The response rate was 77%. RESULTS: A nontreatment decision was made in 30% (95% confidence interval, 28%-31%) of all deaths in the Netherlands in 1995; this is an increase compared with 28% (95% confidence interval, 26%-29%) in 1990; in 20% of all deaths, this decision was the most important end-of-life decision. Artificial nutrition or hydration and antibiotics were the treatments most frequently foregone, each accounting for 25% of cases in which a nontreatment decision was made. Nursing-home physicians withheld or withdrew treatment more often than clinical specialists or general practitioners in 52%, 35%, and 17% of all deaths they were involved with, respectively. Of the patients in whom a nontreatment decision was the most important end-of-life decision, 26% were competent; of those, 93% were involved in the decision making. In 17% of patients, the nontreatment decision was made without being discussed with the patient or the patient's relatives and without knowledge of the patient's wishes. Life was shortened by an estimated 24 hours or less in 42% and 1 month or more in 8% of patients. CONCLUSIONS: Decisions to forego life-prolonging treatment are frequently made end-of-life decisions in the Netherlands and may be increasing. Most of these decisions do not involve high-technology treatments, and the consequences, in terms of shortening of life, are relatively small.

[No conspicuous changes in the practice of medical end-of-life decision-making for neonates and infants in the Netherlands in 2001 as compared to 1995]. / Geen opvallende wijziging in de praktijk van medische beslissingen rond het levenseinde bij pasgeborenen en zuigelingen in Nederland in 2001 vergeleken met 1995.

OBJECTIVE: To establish whether the practice of end-of-life decision-making for neonates and infants under the age of 1 in the Netherlands in 2000 was different from that in 1995. DESIGN: Retrospective descriptive and comparative study. METHODS: In both years, all deaths of children under the age of one year that took place in August-November (1995: n = 338; 2001: n = 347) were studied. The response rate was 96% in 1995 and 84% in 2001. The questionnaires which were sent to the physicians who reported the deaths, included structured questions about whether or not death had been preceded by end-of-life decisions, i.e. decisions to withhold or withdraw potentially life-prolonging treatment or to administer (potentially) life-shortening drugs, and questions about the decision-making process. RESULTS: The proportion of end-of-life decisions increased slightly from 62% to 68% of all deaths in the first year of life, but the difference was not statistically significant. The large majority of these decisions involved withholding or withdrawing life-sustaining treatment. The frequency of decisions to actively terminate the life of an infant who was not dependent on life-sustaining treatment remained stable at 1%. The proportion of decisions that had been discussed with the parents increased slightly, from 91% in 1995 to 97% in 2001; similar percentages of the decisions had been discussed with other physicians. The percentage of decisions that had been discussed with the nursing staff decreased from 40 in 1995 to 28 in 2001. CONCLUSION: The findings suggest that the practice of end-of-life decision-making in neonatology was rather stable between 1995 and 2001. The frequency of the active termination of life had not increased, despite the new euthanasia regulation in the Netherlands.

[Fourth evaluation of the law on the review of termination of life on request and assisted suicide (Euthanasia Act)]. / Vierde evaluatie van de Wet Toetsing Levensbeëindiging op Verzoek en Hulp bij Zelfdoding (Euthanasiewet).

This fall, an extensive study will start to evaluate the Dutch Euthanasia Act. This law was enacted in 2002. According to this law, physicians must report cases of euthanasia and physician-assisted suicide. The cases are then judged by regional euthanasia review committees consisting of a lawyer, a physician and an ethicist. Only if they conclude that the case does not meet the requirements for prudent practice, it will be sent to the public prosecutor. The study will be focused on the practice of medical end-of-life decision-making, the functioning and effects of the Euthanasia Act, and opinions of physicians about the scope of the law and the demarcation between different end-of-life decisions. The study will comprise 4 sub-studies: a judicial evaluation, a death certificate study, a survey among physicians and a panel study among physicians, nurses, members of euthanasia review committees, lawyers and ethicists. This study is the fourth in a row of nationwide studies into end-of-life practices that have been performed since 1990. The previous studies contributed to the public debate about medical care at the end of life and to the development of policy in this field. It is expected that this study, by providing up-to-date information on and insight into end-of-life care in the Netherlands, will do the same.

Diverging trends in colorectal cancer morbidity and mortality. Earlier diagnosis comes at a price.

In developed countries, time trends in the incidence of colorectal cancer differ markedly from trends in mortality. This study sought to explain simultaneously changes in both colorectal cancer incidence and mortality. Data on first admissions, interventions and outcome from the national hospital registry over the period 1978-1989 and data on mortality from Statistics Netherlands over the same period were analysed by age-period models and subsequently entered in a Markov chain model, simulating disease history from first admission to death. Over the period 1978-1989, age adjusted numbers of first admissions and interventions increased by 37% and 32%, respectively, while mortality declined by 8%. For every 100 patients admitted between 1987 and 1989, 13 more will survive compared with 1978-1980. Of these, 3 will be saved by improving results of primary treatment but the other 10 will survive their diagnosis for the subsequent 10 years. Although progress in treatment has been made, therapeutic improvement can account only for the smaller part of the divergence between morbidity and mortality. Increased diagnostic activity, raising incidence and lowering mortality simultaneously, is the most likely cause of the unexplained divergence.

In search of the best upper age limit for breast cancer screening.

The aim of this study was to determine the best upper age limit for a breast cancer screening programme. We used a model-based study using optimistic and pessimistic assumptions, concerning improvement of prognosis due to screen-detection and duration of the period of mammographic detectability, resulting in upper and lower limits for favourable and unfavourable effects. Under pessimistic assumptions, the balance between positive and negative effects of screening remains favourable up to an age of around 80 years. Under optimistic assumptions, this balance never becomes clearly negative with increase of the upper age limit of a screening programme. When including the costs in the analysis, the balance between effects and costs of increasing the upper age limit from 69 to 75 years is likely to be at least as favourable as intensifying a screening programme within the age group 50-69 years. A further increase leads to a markedly less favourable balance. Competing causes of death do not lead to missing net benefit for women up to at least age 80 years, but the disproportional rise of negative effects of screening with age in older women leads to a lower cost-effectiveness ratio than intensifying screening at ages 50-69 years.

How cost-effective is breast cancer screening in different EC countries?

Should the decision to start breast cancer screening in the Netherlands and in the U.K. be followed by other EC countries? This question has been addressed in an exploratory analysis of the differences in cost-effectiveness of breast cancer screening in Spain, France, the U.K. and the Netherlands. A detailed cost-effectiveness analysis of breast cancer screening in the Netherlands has been used as the starting point. Country specific data on incidence, mortality, demography, screening organisation and price levels in health care have been used to predict the costs and effects of nationwide screening programmes, in which women aged 50-70 are invited for 2-yearly mammographic screening. The relative effect of screening is highest in the U.K. (16.55 life-years gained per 1000 screens) and lowest in Spain (8.23 life-years gained per 1000 screens). The cost per screen is highest in Spain (38 pounds) and lowest in the U.K. (18 pounds). In comparison with the yearly health expenditures per capita, the cost per life-year gained is 2.8 times higher in the Netherlands, 3.1 times higher in the U.K., 6.5 times higher in France and 20.6 times higher in Spain. These marked differences show that no uniform policy recommendations for breast cancer screening can be made for all countries of the EC.

Mammography requests in general practice during the introduction of nationwide breast cancer screening, 1988-1995.

Introducing an organised breast cancer screening programme for certain age groups in a population might induce opportunistic screening in adjacent (non-invited) age groups and influence health behaviour in the target population. We analysed the effect of the start of the Dutch national screening programme on the number of mammographies requested by 43-45 general practices for the age groups 30-39, 40-49, 50-69 and 70+ years, using logistic regression analysis. In all age groups an immediate increase was observed in the number of mammography requests after the start of the screening, which was largest and statistically significant in the target population of the screening programme (age 50-69 years). More than 2 years after the start of screening, the number of mammography requests in all age groups had decreased to the level before the start and in the age group 50-69 years the number of mammographies was significantly lower than before the screening started. The unexpected increase in mammographies after the start of the breast cancer screening programme might be related to registry problems or to the process of building up the screening programme. Eventually there was a decrease in the number of mammographies in the target population, probably an effect of the introduction of the national screening programme. Opportunistic screening was not clearly demonstrated in adjacent age groups.

The role of parents in end-of-life decisions in neonatology: physicians' views and practices.

OBJECTIVE: End-of-life decisions for newborn infants are usually made with the consent of parents as well as physicians, but may occasionally involve disagreement about which decision is in the best interest of the child. Our study was aimed at providing an empirical background for the ethical discussion on the parent's versus the physician's role in decision-making. METHODS: We conducted face-to-face interviews with a stratified sample of pediatricians. The response rate was 99%. The most recent decisions in newborn infants to hasten death or not prolong life and the most recent cases in which such decisions were not made because either the parents or the physician objected were comprehensively discussed. RESULTS: Decisions to hasten death or not prolong life were usually made after discussing it with parents and did not occur while parents were known to disagree. Situations in which an end-of-life decision was not made because parents did not consent predominantly involved infants with complications of prematurity (24%) or perinatal asphyxia (40%), whereas situations in which parents requested an end-of-life decision that was not acceded to by the pediatrician involved Down syndrome as the main diagnosis in 43% and as a concurrent diagnosis in 21%. Pediatricians afterwards often expressed feelings of discontent about situations in which there had been disagreement with parents. CONCLUSIONS: The opinion of parents about which medical decision is in the best interest of their child is for pediatricians only decisive in case it invokes the continuation of treatment. The principle of preserving life is abandoned only when the physician feels sufficiently sure that the parents agree that such a course of action is in the best interest of the child.

A measure of survival time for long-term follow-up studies of the elderly.

Studies of determinants of longevity in the elderly by means of a follow-up study are usually based on samples with a wide age range and some selectivity. This poses the problem of constructing a measure of longevity that: (1) will make subjects in the sample comparable regarding survival time, independent of their age and sex; (2) is suitable for long-term follow-up studies; (3) can be used to check the absence or presence of selectivity of the sample with regard to longevity; (4) improves the comparability of studies with different designs and sampling schemes; (5) can take the mortality development over time into account. An individual measure of survival time is presented that satisfies these requirements: the realized probability of dying (RPD). Its construction is described. The RPD is derived from population life tables based on age, year of birth, and sex. For each subject, the relative position on the survival curve within the birth cohort is determined. In an illustration, the RPD is applied to data from a 28-year follow-up study of the elderly in the Netherlands. A comparison is made with other survival measures commonly used in this type of study. It is concluded that the RPD is a powerful and valid measure of longevity in elderly subjects, and that it can be useful in the study of determinants of longevity.